Carrier matching and collective socialization in community genetics: Dor Yeshorim and the reinforcement of stigma

Social Science and Medicine

Volumn 67, Issue 9, 2008, Pages 1361-1369

  Raz, Aviad E ^a   Vizner, Yafa ^a  

^a BEN GURION UNIVERSITY OF THE NEGEV   (Israel)

Author keywords

Bioethics; Community genetics; Israel; Premarital carrier testing; Religion; Stigmatization

Indexed keywords

DISEASE CONTROL; ETHICS; GENETICS; REINFORCEMENT; RELIGION; TESTING METHOD;

ADULT; ARTICLE; BLOOD SAMPLING; CONFLICT OF INTEREST; CULTURAL FACTOR; DEMOGRAPHY; DOR YESHORIM; ETHICS; EXPLORATORY RESEARCH; FEAR; FEMALE; GENETIC ANALYSIS; GENETIC COMPATIBILITY; GENETIC COUNSELING; GENETIC DISORDER; GENETIC INCOMPATIBILITY; GENETIC RISK; GENETIC SCREENING; HEALTH PROGRAM; HETEROZYGOTE; HUMAN; INFORMATION PROCESSING; INTERVIEW; ISRAEL; MARRIAGE; MEDICAL ETHICS; MEDICAL INFORMATION; METHODOLOGY; PERSONAL AUTONOMY; POPULATION GENETICS; PUBLIC OPINION; REINFORCEMENT; RELIGION; SOCIAL ASPECT; SOCIAL PSYCHOLOGY; SOCIALIZATION; SOCIOECONOMICS; STIGMA;

CULTURAL CHARACTERISTICS; FEMALE; GENETIC COUNSELING; HUMANS; JEWS; MALE; MARRIAGE; SOCIALIZATION; STEREOTYPING;

ASIA; DOR; EURASIA; HAIFA [ISRAEL]; ISRAEL; MIDDLE EAST;

EID: 50949107229     PISSN: 02779536     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.socscimed.2008.07.011     Document Type: Article

References (55)

1. Abeliovich D., Quint A., Weinberg N., Verchezon G., Lerer I., Ekstein J., et al. Cystic fibrosis heterozygote screening in the orthodox community of Ashkenazi Jews: the Dor Yeshorim approach and heterozygote frequency. European Journal of Human Genetics 4 (1996) 77-82
2. Ainslie D.C. Bioethics and the problem of pluralism. Social Philosophy & Policy Foundation 19 (2002) 1-28
3. Angastiniotis M.A., and Hadjiminas M.G. Prevention of thalassemia in Cyprus. Lancet 1 (1981) 369-370
4. Angastiniotis M.A., Kyriakidou S., and Hadjiminas M. How thalassemia was controlled in Cyprus. World Health Forum 7 (1986) 291-297
5. Brisson D. Analysis and integration of definitions of community genetics. Community Genetics 3 (2000) 99-101
6. Broide E., Zeigler M., Ekstein J., and Bach G. Screening for carriers of Tay-Sachs disease in the ultraorthodox Ashkenazi Jewish community in Israel. American Journal of Medical Genetics 47 (1993) 21-35
7. Buchanan A. Choosing who will be disabled: genetic intervention and the morality of inclusion. Social Philosophy and Policy 13 (1996) 18-46
8. Buchanan A., Brock D., Daniels N., and Wikler D. From chance to choice (2000), Cambridge University Press, Cambridge
9. Chadwick R. Can genetic counseling avoid the charge of eugenics?. Science in Context 11 3-4 (1998) 471-481
10. In: Clarke A., and Parsons E. (Eds). Culture, kinship and genes: Towards cross-cultural genetics (1996), Macmillan Press, London
11. Condit C. Science and society: how geneticists can help reporters to get their story right. Nature Reviews Genetics 8 (2007) 815-820
12. Davis D. Genetic dilemmas: Reproductive technologies, parental choices and children's futures (2000), Routledge, New York
13. Davis D. Genetic research and communal narratives. Hastings Center Report 34 4 (2004) 40-49
14. Denzin N. The research act (1978), McGraw-Hill, New York
15. Duster T. Backdoor to eugenics (1990), Routledge, New York
16. Ekstein J., and Katzenstein H. The Dor Yeshorim story: community-based carrier screening for Tay-Sachs disease. Advances in Genetics 44 (2001) 297-310
17. Ettorre E. Reproductive genetics, gender and the body (2002), Routledge, London
18. Fanos J., and Johnson J. Barriers to carrier testing for adult cystic fibrosis sibs: the importance of not knowing. American Journal of Medical Genetics 59 1 (2005) 85-91
19. Friedman Ross L. Heterozygote carrier testing in high schools abroad: what are the lessons for the U.S.?. The Journal of Law, Medicine & Ethics 34 4 (2006) 753-764
20. Frumkin A., and Zlotogora J. Genetic screening for reproductive purposes at school: is it a good strategy?. American Journal of Medical Genetics 146A 2 (2007) 264-269
21. Glaser B.G., and Strauss A.L. The discovery of grounded theory (1967), Aldine, Chicago
22. Grilek M. The Haredim: Who are we really? (2002), Keter, Jerusalem (in Hebrew)
23. Gross M., and Ravitsky V. Israel: bioethics in a Jewish-democratic state. Cambridge Quarterly of Healthcare Ethics 12 3 (2003) 247-255
24. Heilman S.C. Defenders of the faith: Inside ultra-orthodox Jewry (1992), Schocken Books, New York
25. Hoedemaeker R., and ten Have H. Geneticization: the Cyprus case. Journal of Medicine and Philosophy 23 3 (1998) 274-287
26. Idel M. Hasidism: Between ecstasy and magic (1995), State University of New York Press, New York
27. Jacobs L., and Marks S. Shidduch secrets: The ultimate guide to finding a spouse (2006), Shaar Press
28. King P. The past as prologue: race, class, and gene discrimination. In: Annas G., and Elias S. (Eds). Gene mapping: Using law and ethics as guides (1992), Oxford University Press, Oxford 94-111
29. Kolata G. Nightmare or the dream of a new era in genetics?. New York Times (1993, December 7) A1
30. Kolker A., and Burke B.M. Prenatal testing: A sociological perspective (1998), Bergin and Garvey, Westport, CT
31. Lai Po-Wah J.T. Global bioethics, global dialogue: introduction. In: Lai Po-Wah J.T. (Ed). Cross-cultural perspectives on the (im)possibility of global bioethics (2002), Kluwer Academic Publishers, Dordrecht 1-18
32. Landau R. Religiosity, nationalism and human reproduction: the case of Israel. The International Journal of Sociology and Social Policy 23 12 (2003) 64-81
33. Marshall P., and Koenig B. Accounting for culture in a globalized bioethics. Journal of Law, Medicine & Ethics 32 (2004) 256-266
34. Merz B. Matchmaking scheme solves Tay-Sachs problem. Journal of the American Medical Association 258 (1987) 263-269
35. Mitchell J., Capua A., Clow C., and Scriver C. Twenty-year outcome analysis of genetic screening programs for Tay-Sachs and [beta]-thalassemia disease carriers in high schools. American Journal of Human Genetics 59 (1996) 793-798
36. Nadler A.L. The faith of the Mithnagdim: Rabbinic responses to hasidic rapture (1997), John Hopkins University Press, Baltimore
37. Nelkin D., and Lindee M. The DNA mystique: The gene as a cultural icon (1995), Freeman & Company, New York
38. New Scientist. The Rabbi's dilemma. Interview with Joseph Ekstein by Alison George. New Scientist 181 2434 (2004) 44-47
39. Parens E., and Asch A. Prenatal testing and disability rights (2000), Georgetown University Press, Washington, DC
40. Prainsack B., and Siegal G. The rise of genetic couplehood: a comparative view of pre-marital genetic screening. BioSocieties 1 (2006) 17-36
41. Rapp R. Testing women, testing the fetus: The social impact of amniocentesis in America (1999), Routledge, New York
42. Raz A. 'Important to test, important to support': attitudes toward disability rights and prenatal diagnosis among leaders of support groups for genetic disorders in Israel. Social Science & Medicine 59 9 (2004) 1857-1866
43. Raz A. The gene and the genie: Tradition, medicalization, and genetic counseling in a Bedouin community (2005), Carolina Academic Press, Durham, NC
44. Remennick L. The quest after the perfect baby: why do Israeli women seek prenatal genetic testing?. Sociology of Health and Illness 28 1 (2006) 21-53
45. Sagi M. Genetic screening in Israel. Science in Context 11 3-4 (1998) 419-431
46. Saxton M. Disability rights and selective abortion. In: Solinger R. (Ed). Abortion wars: A half century of struggle, 1950-2000 (1997), University of California Press, Berkeley and Los Angeles 374-395
47. Scriver C.R. Community genetics and dignity in diversity in the Quebec network of genetic medicine. Community Genetics 9 (2006) 142-152
48. Sharp R., and Foster M. Involving study populations in the review of genetic research. The Journal of Law, Medicine & Ethics 28 1 (2000) 41-51
49. Sher C., Romano-Zelekha O., Green M., and Shohat T. Factors affecting performance of prenatal genetic testing by Israeli Jewish women. American Journal of Medical Genetics 120A (2003) 418-422
50. Slifka L.S. Review essay: the troubled dream of genetic medicine. Pediatric Nursing 33 3 (2007) 271-274
51. Strike K. Liberalism, communitarianism, and the space between. Journal of Moral Education 29 2 (2000) 133-147
52. Wailoo K. Dying in the city of the blues: Sickle cell anemia and the politics of race and health (2001), University of North Carolina Press, Chapel Hill
53. Wailoo K., and Pemberton S. The troubled dream of genetic medicine ethnicity and innovation in Tay-Sachs, cystic fibrosis, and sickle cell disease (2006), Johns Hopkins University Press, Baltimore
54. Zeesman S., Clow C., Cartier L., and Scriver C. A private view of heterozygosity: eight-year follow-up study on carriers of the Tay-Sachs gene detected by high school screening in Montreal. American Journal of Medical Genetics 18 (1984) 769-778
55. Zlotogora J., and Leventhal A. Screening for genetic disorders among Jews: how should the Tay-Sachs screening program be continued?. Israel Medical Association Journal 2 9 (2000) 665-667